the silence of our friends

There will always be those who are unable to see beyond their own limited parameters of what qualifies as communication, but there will also, thank God, be people like Barb [Rentenbach] (and Carly Fleischmann and countless others), who continue to show us what is possible when we are willing and able to open our minds.

~ My response to a comment on Wednesday’s post

You’re right, I am very emotional about this. because it scares me to death to think that my daughter could be this easily dismissed or feel that she has to prove herself simply because narrow minds refuse to believe her capable of .. well .. anything.

I’m not advocating for a miracle intervention. I’m not even advocating for facilitated communication conceptually. I’m advocating for a human being whose work I admire, whose friendship I’ve been blessed by and who shouldn’t have to carry the burden of proof on her shoulders because she dares to have something brilliant to say.

~ And another

*

On Wednesday, something happened here. I’ve torn myself apart trying to decide whether it’s best to talk about it or to simply walk away and hope that i’ve already said enough. But I’m not sure that I can. Just walk away that is. Because this little space in this little corner of the Internet — this place of respect and warmth, of love and laughter, of comfort and community and reasoned debate, feels sacred to me. It feels safe. And on Wednesday, it took a turn from feeling safe. I unwittingly and regretfully allowed it to become a platform for prejudice, and I need to make that right.

I’d written a post that I was proud of. Something that I dared, quite immodestly, to say I thought was important. I called it Rethinking Functional Behavior and the Tyranny of Made-up Deadlines. If you missed it, please read it. It means a lot to me, and, I think, to all of us.

The post was about slowing down. About breaking free from the panic caused by what I believe to be the desperately wrong-headed belief that development and growth happen during only some prescribed (and finite) period of time.

I cited Barb Rentenbach, a woman whose book I am slowly but surely devouring (and processing and re-reading and processing some more before absorbing) day after day after day. I noted that Barb, who is non-verbal, types her thoughts, a process that, for her, has very gradually evolved from very heavily facilitated to now independent typing.

I approved a comment in which a reader referred to Barb’s typing as a hoax. I was torn when I approved it for publication, but I thought it was important to address and debunk the accusation, as hurtful as it was, because I have come to learn that even some of the most outrageous comments can represent others’ unspoken, and sometimes even unrecognized, similar sentiments. And if there is skepticism running rampant out there, acknowledged or not, well, we need to talk about it. Because I can think of nothing more dangerous or insidious than allowing prejudice to run unchecked.

But allowing that comment through allowed for more conversation. Which should have been a good thing, but the conversation led to more accusation and ultimately left off in a place that left me angry for Barb and scared to death for my child and really damned sad about how far we apparently really are from truly recognizing, acknowledging and respecting each other’s humanity, and in so doing, abandoning our predetermined notions about who can be capable of what. It’s soul-crushing sometimes to realize just how much work there is yet to do.

I considered deleting the comments entirely after the fact, because I worried about their effect on those who will read them, but I just can’t bring myself to censor the blog ex post facto. It feels wrong. But so too, I hate the thought that a post that I wrote could have brought pain to Barb and to others like her, whose hard-won voices are being so callously silenced, who have been told that their voices don’t count because they aren’t “real”, whose ideas are being tossed to the curb with yesterday’s trash, who are being forced to carry the burden of proof of thinking their own thoughts. I can’t believe I had to write the last part of that sentence. Please, read it again — they are being forced to carry the burden of proof of thinking their own thoughts. For the love of God, can you imagine living like that?

In 1987, I wrote a paper for an AP English class on James Thurber’s short stories. My teacher called it plagiarism. I didn’t really want to admit to her that the most salient “proof” that I had of why it had to be original work was that I hadn’t actually done any research nor read anyone else’s opinions; I’d only read his stories. Mostly because I was too lazy to go and read what other people had to say about them, but also because I had plenty to say myself. But she persisted. She wouldn’t accept the paper. She called my father, a middle school principal at the time, to tell him that I had clearly plagiarized someone else’s work. My father asked her what the source was, planning to read both my paper and the source from which she believe I’d lifted its content so that he could form his own opinion before talking to me about it. Her answer, “I don’t know. I haven’t found the source yet.”

My father was baffled, as was I. She went on to say that she didn’t yet know where I’d taken my paper from, but there was no way it was the work of a high school senior because it was simply too advanced. She assured him that she was going to keep searching for the source, but in the meantime, I was free to prove that I didn’t plagiarise, and when I did she’d give me credit for the paper.

26 years later, I remember exactly how that felt. I remember the anger, the frustration, the impotence, the desperate lack of logic. I remember laughing that I was being punished for doing something well. I remember asking my dad how one can possibly prove a negative. If she could find a source, she had proof. If she couldn’t, it just meant that she wasn’t done searching. Me? I had nothing but my word.

Above all, I remember the doubt. I remember thinking that even my dad likely thought that I had, at the very least, inadvertently read something and absorbed it as my own, later regurgitating it without realizing that I had.

26 years later, I still remember.

I can’t possibly fathom walking through life in some extended-play version of that moment. And that moment is NOTHING relative to this. It kills me to imagine what it must feel like to be told that your thoughts can’t possibly be your own when you’ve fought so damned hard to find a way to communicate them.

To be clear, I am not making an argument for Facilitated Communication, nor am I dismissing the very real dangers of it being abused, just like any other methodology that relies on human beings for its execution.

As I wrote in the comment at the top of the page, what I *am* doing, and why I felt compelled to write this post, is “advocating for a human being whose work I admire, whose friendship I’ve been blessed by and who shouldn’t have to carry the burden of proof on her shoulders because she dares to have something brilliant to say.”

So as much as I may have preferred not to give this topic any further air time, remaining silent in the face of the silencing of others was not an option. Not here — not in my house.

That’s what I’ve got.

Thankfully, someone else has promised to take it from here.

Screen shot 2013-06-07 at 6.05.19 AM

Whenever you’re ready, my friend, my platform is yours.

In the meantime, I’ll be remembering your words about why you write. The ones that struck something deep inside of me when I first read them because I felt like I could have written them myself. But that’s your point, isn’t it? I might be you.

Birds sing not because they have to but because they can, as it is part of their purpose and who they are. Birds strive to sing. They will sing whether or not anyone is around to hear, but trust me, they are all heard. Words are my notes and sentences are my songs. I strive to write. I trust others will enjoy and be lifted by the work, but I will continue to sing either way.

**

Ed note: I will not allow this post to become a platform for debate about FC, nor will I publish any comments that even remotely violate Diary’s Comment Policy, which can be found in the toolbar to the right of the screen (or below on mobile devices.) Thank you in advance for helping me to keep this place sacred and safe for ALL.

Ed other note: Ariane Zurcher wrote a wonderful post about this as well. Please check it out when you can.

Ed other, other note, added months later .. Read this .. Just do … http://ollibean.com/2014/07/10/i-dont-want-your-protection/

 

45 thoughts on “the silence of our friends

  1. There will always be those that doubt and question. It will be their loss. My daughter’s math teacher in 6th grade (reg. ed teacher in inclusion) could not believe that my daughter could do math w/o showing her work. She could not understand that all the work was done in her head and that to “show her work” seemed ridiculous to her. The teacher kept taking off points even though the answers were 100% correct and done IN CLASS (so she wasn’t cheating!) It was beyond frustrating! Because she could not possibly understand this method, she could not accept it! Keep pushing forward! BTW, I wonder if these same “doubters” have seen Carly in her interviews? How can you question that? 🙂

    • This is really off topic from the point you were making. And I totally believe your daughter can and does do her math in her head. But I want to make a case for why it is important for her to learn to show her work if she wants to be someone who uses math professionally one day (I’m one of those people). I wish her math teacher was doing a better job of explaining why showing your work is important – because if your daughter knew that, it might reduce her frustration and she might even be motivated to see how well she can do it.

      Think of a math problem as a persuasive essay and the answer as the conclusion. Showing your work is the argument. It is how you persuade others to your point of view. It is how you show others how you came to conclusion you came to. ‘Showing your work’ is how engineers and scientists communicate to each other. Its how they explain to others why the bridge they designed wont fall down. No responsible engineering firm will ever let a design out the door that has not been checked by at least two people (we are human, we make mistakes). If the consequences of our mistakes are collapsed buildings, or rockets that don’t get to Mars etc., we check our work, and we have other people check our work too, To enable that, we have to show our work. That way the checker is just following each step to see if it makes sense and was done correctly, instead of having to solve the problem independently from scratch (much more work than checking).

      I know this was just an example, and you probably have others you could have used. But I hope it helps your daughter think differently about showing her work in math.

      • (Sorry for the OT) — but, yes, yes. I had that experience in middle and high school, too! My teacher’s eventually realized that they *did* need to figure out, and *explain* *why* they wanted me to “show my work”, but it took too damm long.

      • Apparently Einstein had a similar problem and was conscidered tobe a bit of a dumkof.He was taught to be a detective by his uncle and mastered many fields of math and science.He was able to see farther beyond the problem itself. Even beyond the Author of a problem as in Max Planks case about Quantums of Fields or Physics or Mechanics or Mathematics. He sought about to prove Planks Theory to be Correct as Plank had actually given up on it.
        One day when at a Uni he observed several boards of mathematical equations and formulaes.He asked a young science academic there what they were.
        Their reply was thats Einsteins Theory!
        He went over and had a closer look and started to rub off a section in the middle and said “What have you lot done to my theory. You’ve put so much mathmetical formulaes to it that I can,t even recognise it. He then picked up a chalk and wrote for the first time E=MCXMC. Whats that the young man said.
        To which the reply wasThat is what Einstein meant.

  2. As you know I used to comment on your blog/FB posts on a regular, if not daily basis. I stopped that when I felt judged and have never looked back. Now I will occasionally comment when I feel compelled to do so, like today. We live in a society where people feel the right to judge, sadly even in this community. I know folks who no longer subscribe to this blog because they have been judged which totally bums me out. Agreement #2 from the book The Four Agreements-Do not personalize!! Love and try to live be that book!!!

    Remember this, lead with compassion, share with grace? I learned that through you, best thing you have ever shared! Maybe that phrase needs to be shared again??

  3. Isn’t there a saying about walking a mile in someone’s shoes? That.
    People are so quick to judge and point fingers but then offer no real solutions, or help, or remedies or anything, for that matter. Except criticism. I haven’t read your other piece or hers but I can tell you without a doubt that folks need to take a good, long look in the mirror sometimes.

  4. This just makes me angry. That post was very special and near, and dear to my heart (You know why, Jess). As a Mother of a little girl who is struggling to communicate. A little girl who (right now) can only echo back and repeat phrases she’s heard. A little girl who I KNOW has thoughts. feelings, and ideas to express. A little girl who recently started drawing faces, and then crossed out the mouths. It broke my heart, and at the same time blew my mind. That she found an avenue to express her frustration. I know there is so much inside her just aching to get out, if we could only find a way to help her do that. PECS progress has been painfully slow. So recently, I tried AC. Not only has she been using it, but pairing it with the verbal request. This is HUGE.
    These kids, these adults fight so hard to have their voices heard. It’s hard won, and it pains me to think they could be dismissed. It’s just plain wrong. Kudos to all those Autistic Adults who have fought so hard to have their voices heard. I can’t say I understand how it feels, but i can empathize with the frustration, and the battle and ultimate victory that comes with finding a way to be heard.
    “Not being able to speak is not the same as having nothing to say” Amen. I’m so sorry you have to face such prejudice and doubt. We have so much work yet to do.

    • Hits home for me this morning too. My son, to “outsiders”, is “high-functioning”, mostly because of his vocabulary and ability to respond amazingly well with script to just about any question. But… There’s very little he says that I don’t have to interpret. I feel like I’m guessing what he’s feeling, putting words in his mouth. Anyway, this post is timely because yesterday he brought home a journal he wrote and drew in over the course of the school year, and I’m sorry to say that I learned a lot from that little book. What if my son never learned how to write because no one wanted to take the time to help him develop hand strength to do so? What if no one cared to encourage him to respond creatively? Yes, he has language, but that, my friend, is the scary part… My way of communicating may not be his, and it’s MY job to figure that out and help him express things HIS way. Thanks again for the reminders.

      • One of the problems with “Theory of Mind” regarding autism is that it fails to give credit to the thoughts of autistic people. When my son took creative writing his senior year of high school, I doubted he would do well in the course due to his rigid rule following, and what I thought was a lack of creativity. His strength in that class was his willingness to take the teacher seriously and work hard at what she asked. Many students think it is a blow-off class. He aced the class. When he showed me his portfolio, it was evident that he deserved his grade. I looked at my son in a new way. He is still autistic, creative writing is not his career path (but programming is – which requires some creative thinking). But he thinks just as deeply, if not more, than many people who are not autistic.

        Your son may “see” things and think thoughts that others are too distracted to think about.

  5. all you can do is trust your gut about which comments to publish. if people then post hateful statements and abuse your desire for genuine conversation…that’s on them, not you.

  6. I was hesitant to read this post because I didn’t want to be reminded of the anger I felt when I read the comments the reader posted. I was angry at his judgement and callousness and angrier when you had to continually defend your post and Barb’s words against his accusations. I needed to read this post just as I needed my coffee (and this mama NEEDS her coffee). Thanks!

  7. Chavisory had a good point. I want to see the scientific studies conclusively proving that psychic back massage can in point of fact magically control someone’s choice of letters while typing. I need to see an ANOVA run on large n results with non-Autistic subjects comparing qwerty and alphabetical layouts. If psychic back massage typing control turns out only to work on Autistics, it would tend to suggest we have exaggeratedly heightened psi powers, which is the polar opposite of an absence of empathy. I demand proof immediately!

  8. I didn’t comment on your other post because I know I’ve shared my thoughts about the need for down-time, etc in the past. I missed the comments about FC and the back and forth. Having just now read it AND this post, I’m sobbing in frustration and fear over this. The notion that there would be people who disbelieve my son’s communications via AAC is not only unfathomable (until now), it is anathema to me. The notion that there are people who truly believe people like Barb, or Nik or anyone with any cognitive or communication-based disability, must be incapable of deep and insightful thought and expression, or devoid of an ability to create meaningful connections without a phantom puppeteer… I can’t even rationally express how that makes me feel.

    Your response to LK, “…but using the starting point to discount the result is patently absurd.” really struck a chord within me. By that person’s measure, my son should be grunting and drooling in a corner somewhere, writhing on the floor in his own waste instead of the vibrant, happy, determined boy who loves people and playing at the park or swimming in the ocean. The one who taught himself letters and numbers, spelling and elementary reading skills. And oh so much more.

    Because NO ONE could possibly predict what the human brain is capable of achieving given the right supports and circumstances. At best, all we can ever really do is TRY. And far too often we fail at predicting.

    I can’t wait to read Barb’s book.

  9. Brilliant … brings back a memory urim childhood. My sister who was skipped from kindergarten to first grade really was too young in all ways never caught up age wise with her peers. My dad died when she ws 14 and a homework assignment was to write a poem. She wrote a poem about my dad and it was superb. The teacher gave it back saying she did not write it as she did not have the depth… she certainly did write it and my mom went up to school and confronted the teacher. I might even have a copy of that poem 57 years later.

  10. I had read about FC years ago when I was reading everything to figure out what would help my boy. I put it aside as I did most things that I read and chose to keep focused on mostly just being with him and doing things together. There is a lot of quackery out there, you know. I never really thought much more about FC until just more than a year ago when — purely by accident — I discovered that Oliver could write if I gave his hand some resistance. Only later did I realize that people would consider this FC. Over the course of the year he has become more and more independent and I know this is how he will share his voice with the world. After 9 years of wanting to know my boys thoughts and wondering if I ever would, I could really care less about the doubters. My son has nothing to prove. And we have gained everything by believing in him. What more is there, really?

    • “My son has nothing to prove. And we have gained everything by believing in him. What more is there, really?”

      A thousand times yes. Thank you for sharing this here.

  11. Thank you. As a facilitated communication user, not yet independent, i want to say that, while being seen as a completely incapable and unworthy person hurts, I will focus my energy on my personal growth and count on the support and inputs of people who matter. My life is my journey and things happen – or don’t – on my own time. It cannot be rushed to fill someone else’s agenda.

    “A bird doesn’t sing because it has an answer, it sings because it has a song.”
    ― Maya Angelou

    • Oh, how I love that quote! Amy, thank you for coming here, to my little corner of the Internet and sharing your thoughts.

      I am, as I’ve told you before directly and written here on Diary, a huge fan of your work. I am so grateful for your voice, and even more, that you continue to share your thoughts with us, undaunted by those who who suffer the greatest loss imaginable by dismissing them.

      Hugs.

    • Beautiful. Life IS a journey. (And the journey is not a privilege, it’s a passage for us each to lend our own design.) Those who are focused solely on the destination miss all of the lush and rich and diverse scenery along the way.

  12. I was reading the comment thread last night, and it made me sad too. I have a friend who suffered a traumatic brain injury a few years ago, and she struggles with verbal communication as well. Its hard for her to find the right words to say in the moment she needs to say them, but it is not because of a lack of intelligence. She has the words inside her, just struggles to get them out. My son did a picture journal this year at school, which we just got to see. My first thought was, I wonder if he really understands this? Which made me mad the very next second, because as I looked through the pages, of course I saw him and a form of expression that worked better than verbalizing. And now I know that he wants to go swimming and fishing this summer, and we are making plans to ensure that he does. Thanks for always representing openness, and I can’t wait to read what Barb writes!

  13. Thank you for this blog posting and the previous post to which you refer. It is always heartening to read the writings of someone who understands this issue as you do. As a person who has watched Barb and many others struggle to come out of silence through typing with support and to work toward independent typing, I myself know that the thoughts and struggles are real. I also have seen that they are sometimes met with quite vehement rejection, as seen in some comments to your blogs. Thankfully we have a growing community (thank you for joining it) which welcomes the emergence of these people coming out of silence by using what for them is a method of last resort after lack of success with many other communication methods. Thank goodness for all the supporters who presume competence and who persevere to try new methods until one works to allow the person to achieve effective expression–and for individuals who are willing to keep trying to communicate in the hopes of finding a method that works! When we supporters feel the attack on the communication method that they choose to use, and with which many of us support them as facilitators to learn, we feel it deeply and sadly. At these times, I remind myself that the strong feelings that I experience in my core are only a shadow of the experience of individuals who have spent many years without communication success and who are finally communicating and struggling to express who they are inside by sharing their thoughts in a sometimes unlistening world. It is sad to think that strangers and others go out of their way to level verbal attacks on the personhood of these emerging communicators, but that is indeed what is still happening–even though these self-appointed critics probably see their role as much more innocuous or even beneficent in questioning the method itself. But, for critics to accept the possibility that the individuals typing are truly the people whose voices are coming through requires them to acknowledge and rethink many preconceptions and misconceptions. The possibility that the typed words could be the person’s real thoughts may seem unthinkable, while an admittedly safer and easier route is to reject the supported typing process and the individuals involved, pointing out the risks and uncertainties. But let me be clear on this: the risk of having no effective method of communication is monumental, and many people sadly and painfully still live in that silent abyss, as Chammi Rajapatirana terms it. Grappling with rethinking deeply held beliefs about people who are not able to speak effectively with their voices is not for the weak-hearted but it is worth the effort. Letting people use the method of their choice to communicate is respectful and logical, and critics would do well to acknowledge this. I often come back respectfully to the familiar and apt sayings, “The person who says it cannot be done should not interrupt the person doing it” and “If you aren’t going to help, at least don’t get in the way.” Thanks again for understanding and for helping through your comments and writings.

  14. I bet people are always giving you stuff to read. But here’s another I just zipped through in the last 24 hours–I thought it a stunning look inside our children–Anything But Typical by Nora Raleigh Baskin. Just giving you more to do. 🙂

  15. I just really want to say WOW!! I’m not sure what prompted me to read this article today, but I am so glad I did. There are so many gems in your post and even more in the following comments. I do not have a child with Autism but I have three children and so much of what is discussed applies to us all…how often we feel pressured to not waste a moment, there must be activities to maximise their absorbent little minds and give them the best chances in life & you know what? Sometimes they just want to ‘be’, be left to play, make noise, sit and mindlessly stare at the tv etc. They are older now and use terms like ‘chill out time’, ‘down time’, ‘we want to veg out’ , yes, time away from the demands of their lives (demands I dare say we impose upon them because goodness knows what the possible outcomes would be if we didn’t, what lousy parents we would be if we don’t provide as many experiences as possible. Heaven forbid they just grow with really happy memories of being kids without the stress of having to be their best and learn ALL the time). Anyway, I digress!
    Back on point, no, I’ll digress further…..(only coz that’s how my PTSD brain is ‘functioning’ at the moment)! I read a blog a while back, cannot remember much of it but the theme stuck with me…’Disability or different ability’
    May I be so bold as to suggest people with autism have ‘different abilities’ and some enormous challenges and frustrations in being or making themselves understood (I hope this is making some kind of sense) but they are, at the end of the day, ‘different abilities’ or have different abilities!
    People will be skeptics, challenge what they see – its a good way to learn & grow for us all, IF we are open to the answers not always being what we expect (guess I’m thinking of those who don’t believe what they are seeing & hope they are open to the answers before them, ready to accept something different to their beliefs when they’ve completed their research).
    Some queried ‘function’. The dictionary definition of function is:
    Noun:the kind of action or activity proper to a person…
    Verb: to perform a specified action or activity…
    Rocking is a function & does have a purpose. Just because we may not understand it doesn’t make it any less important & valid as a function and let me tell you it is incredibly soothing when your body is so overwhelmed by frustration, anxiety and even pain (I know this because it is often a strategy I use to self soothe – I live with the legacies of years of childhood trauma and now PTSD….rocking works). People don’t understand and their reaction is far more about their discomfort with the situation than mine! I lived with years of not being heard and I have what is considered the ‘normal’ ability to communicate and even still the frustration, anger and other emotion that comes with not being heard OR validated is huge, the internal body responses are huge at times. I dare say we all face situations where we need to express ourselves, and we do that in the best way that works for us as individuals. Clearly your friends have found their way through assisted communication – hats off to them all, their perseverance in finding their voices and shouter ever louder to make themselves heard – so totally AWESOME!!
    I might also add that I am in awe of many comments here & your own blogs and only wish I could write and articulate as well as many of you……often my words just don’t make it to paper but it also makes me wonder
    whether there are any among the skeptics who feel challenged about their own abilities to write, perhaps like me they want to, perhaps like me they feel some kind of envy at your abilities to express yourselves and indeed the incredible abilities of those with autism who have overcome so much to be heard, perhaps their questioning that has struck a nerve says more about their abilities than yours or your friends???!!!
    I’m not sure now if I have managed to cover some of the emotion I felt in reading your post and the comments that followed, I certainly hope and pray nothing has offended! I will finish off by very clearly saying WOW, I’m so glad I read these articles this morning and I am in total awe of your abilities to so cleverly write and articulate the way you have not to mention the bravery you all display in persevering in the challenges you face!!
    Oh, actually I just want to share one last thing with you….in my recent studies in mental health we discussed ‘normal’, one instructor made this point: there is only two kinds of normal – shampoo & a cycle on the washing machine 🙂
    I might add we see less of those on the machines these days too!
    Normal is what is normal to each individual, ‘my kind of normal’
    Lesson is more about accepting everyone’s differences in abilities and my thoughts are to then certainly celebrate those successes and validate the champion efforts in overcoming any challenges that got you to your goal in the end!!
    Cheers and very best wishes, thank you for sharing 🙂
    Kymm

  16. I get this and feel it and live it. I have seen the moments where my son takes a moment out of day to show me a little of world with a whole lot of work on his part amd mine. He blows me away with his awareness and insight and has shown that he sees all, but says little about it. He is trying his best to tell me about his world but klingon doesn’t translate to english very easily, leading to quite a few misunderstandings on my part. I dread that his voice would be silenced because a narrow minded group of people can’t believe someone who seems to be lost is always in the moment, always aware. His voice is important to all of us, like Carly’s and Barb’s and many others. The more we hear their voices and really listen, the better we can understand their view of the world and it looks to them, how it feels to them. This understanding would aid in breaking the “perfection model” idea that is held in our society, allowing us to more towards a more inclusive way of educating ourselves. Think of it like the way Americans view languages. Americans tend to think of english as the only language that should be spoken here in the US. We carry this same mentality when it comes to dealing with autistic people. We make them learn our language, see the world our way. All we have accomplished is making them translate green to blue, klingon to english. They still see the world their way. We should always be striving to speak klingon and see in shades of green in addition to how we normally communicate and view the world.
    I really feel your pain about that english paper you wrote about the short stories. I was accused of cheating on math tests several times throughout high school because I can do the math in my head without having to write anything down. How do you prove your innocence? One teacher was convinced I cheated because he couldn’t it in his head, so how could I? It pained me and held me back from true excellence when few people believed I was really doing it in my head, that this wasn’t facilitated communication. These memories are why I fear for their voices, fear that their messages and lessons for us will be lost.

  17. My heart goes out to everyone. My 35 year old niece is a special needs child. She does not communicate verbally, has very limited skills, a very low IQ, but no one can tell me that her smile is false. Absolutely, no one! So, if I can say this; it is not of ‘who thinks what, or of whom’ but rather, that everyone’s circumstance is unique, and what may work for one, or some, is not so for others. As for whether or not the author was coaxed, or any other word/ words one may choose, who are we to judge? Which one of us was the ‘fly upon the wall?’
    Our challenges are many, may our grievances be meager. I live in a glass house, please don’t cast stones.

  18. Thanks for sharing this. I am a Mum on 2 girls with Autism, one verbal and one non. My youngest says the odd word and once in a blue moon. The one word she does say clearly and in context is NO. As for her communication she uses Makaton and the Grid 2 on a computer and on an Apple itouch which is her voice. She understands verbal and signing. She certainly gets her point across even when not using a device to talk for her.

    When L was first diagnosed we asked the doctor would she ever talk, he replied no one knows the answer. I went to see a talk by Wendy Lawson who is a lady with Autism. I remember someone asking when did she start talking? and her reply was about the age of 6. Up to then she didn’t see the point until one day she need to get her neighbours attention. So this gave me hope.

    I know its hard not to let peoples narrow minded, uneducated opinions from getting to us. What do they know? do they live with it or with someone that does? I have lost count the amount of times I have read or heard something that has made me so upset or angry. I am glad that you didn’t decide to delete the comments. It just shows the rest of us how stupid, dumb and idiotic they really are.

    Great post, keep it up and congrats on Freshly Pressed…

    Sending hugs your way 😀

  19. great post as usual. I see and hear this type of judgement stuff all the time. I have a daughter with special needs and I sadly hear this stuff from mostly family. I pray for the day that we can all live with eachothers differences rather comparing one to another. as a special needs parent its taken a lot to look the other way on such stuff. as time has gone on I have become better with practice. my child has autism and as you can imagine when she has meltdowns it is quite difficult but Ive taken the mind set that they don’t know my situation so why worry what they think. she recently has started to wear headphones because of sound issues and its priceless when people see her its as if they just seen something so strange. peoples narrow minded uneducated thoughts don’t bother me as much as they used to. keep up the good fight. Love reading your posts each day.

  20. I believe that letting those who are clearly speaking from lack of knowledge have their say generally proves enlightening to all who witness it. I applaud the courage it takes to let them have a voice on your post even though it was likely heartbreaking to see it play out.

  21. Hello,
    I am Wet behind the ears new here. I am also new to writing and sharing properly in a blog. However, when it comes to my poetry and free writing, it’s just that, free writing. I do not like having to follow so many meticulous rules about how to write. This is because I see creative writing as a form of expression and there should be some freedom to it as long as it makes perfect sense, or there are people who can relate to, or just plain get it. First person, present tense, to me are ok for writing rules especially in the workplace. However, in a creative place these tenses and persons should be “freer” so that the writer, or the poet can make the expression true and even effective when called for.
    With that said, before I even read what you wrote last Wednesday, I can tell by what you wrote today that you are true and sincere. As an un-trained, rather, un-chained writer, I think you were right to let others feel free to express themselves even when dealing with whatever types of prejudices.
    Maybe, if it got out of hand, you should just post a little reminder about respect asking the persons posting if they would like the same and to remember to use it or their post will be deleted and maybe even them being banned from your blog?
    In cases that I recall, this warning was a helpful tool, even in a race related topic forum.

    On the note of communication and expression, I believe that you did right allowing some posts. I guess the only example I can give for this is…
    Think about all of the massacre’s and/or mass shooting sprees and murder suicides we have. Think of how many there have been of late. Maybe if there was a time and place that the shooter/mass murderer could have been in that made him/her feel he/she was being listened to, or heard… Just maybe it would have, could have made a difference in his/her decision to go and kill others. Maybe?

    I know, this was a pretty deep example but on another note, I sort of get the impression that you are writing here about this as a Professional Psychologist or Psychiatrist? Even if you are not, I still feel I need to tell you that it’s not so terrible if it is done respectfully, or, at least, in moderated form.

    You, the Author, the Host, are free to edit out whatever gets out of hand, especially using the “pending approval” comment option.
    Oh, and no… I do not think you did wrong in any way, I just think you need to utilize the “editor/moderator options”.

    I will go and read the last Wednesday post within a few trifling hours of my own. However, I do hope my reply and view helps you, at least a bit.

    I also agree and like what the previous poster, “followechos” had to say. It made a loud and clear point. The narrow minded posters are not you, and do not speak for you. It may be good in the sense followechoes pointed out; that you did not delete what they posted. True. On another note, who needs it, delete that or do not approve that which is out of hand or way “over board”.

    Blessings to all of you!

    Take Care,

    – i-freebird / Sheryl PS.

  22. Your title to this writing captured my attention and my initial visit here and I must say I found your thoughts articulate and compelling. Silence would not have served you or your reading audience well. From time to time we experience a difficult ‘interpretation’ of our words, a bias or misconception out of ignorance. There is a passion and clarity in your words that seeks reasonable resolve. I have rarely resorted to deleting an unwelcome comment as the author has rightful opinion however should the respondent’s comments turn to flaming, rude or outlandish, misconstrued, aggrieved or bullish, aggressive attacks I would not hesitate. Your conviction to what feels appropriate is welcome and well-founded and indeed, this is your place to share what you will to the benefit of your readers. I have followed and look forward to your future writings.

  23. hey if it makes you feel any better-I too was accused by a highschool teacher of plagiarizing a book report-in the 10th grade-lord of the flies-it sucked butt-she did so IN FRONT OF THE WHOLE CLASS-the only thing that really got me through it was the fact that all of the kids I had grown up with in school KNEW I was brilliant-they had already seen other teachers gush over my writing

  24. My GOD. If only my son was able to communicate his needs in a reliable fashion! To know what is going on in his noggin! To be able to curb the frustration and the anger and the guilt and the pressure and the points and the stares? Backasswards. That is where we are headed. While my chest is tight thinking of this disservice to our community, I agree that healthy debate is a good thing. Thank you for providing a place that I, for the first time, feel like I am surrounded by people who “get it”.

  25. There is absolutely nothing like being forced to prove something that is very real to you. Better yet, is when you are trapped into being made to look like the asshole because you are the only one (that you know) with your unique situation. I applaud you and Barb for your courage.

    I might add, you story about the plagiarism just killed me. I had no choice but to laugh. In high school, I was the “nerdiac”. I wrote papers for my classmates out of pure sympathy. I’d do my own and then carry on to the next person’s paper and I did it with ease. It was smooth sailing until the 11th grade when I decided to help an “F” student. My, ummm…errr…her paper was written so well that the English teacher knew that she didn’t write it. It was a small private school and through process of elimination, the teacher figured out who this girl hung out with and busted me. Had she known how many people I had eased through Senior High, she probably would have voted to have a wing of the school named after me, but I had to settle for a scolding and an “atta girl” all at the same time. Nobody spun The Great Gatsby like I did 🙂

  26. Reblogged this on Modus Getar and commented:
    Birds sing not because they have to but because they can, as it is part of their purpose and who they are. Birds strive to sing. They will sing whether or not anyone is around to hear, but trust me, they are all heard. Words are my notes and sentences are my songs. I strive to write. I trust others will enjoy and be lifted by the work, but I will continue to sing either way.

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